a short story I wrote for my son who has a birth defect

Copyright January2004 M.Swaim











Angel Cookies
A story for kids with severe Pectus Excavatum
(a birth defect where the chest sinks in several inches, causing the organs to be compressed or to grow in the wrong place)
By
Melissa Swaim


Andrew was a big boy now. One day while getting dressed all by himself, he

noticed that he looked different than his brother Harley. When he looked in the mirror, he

saw how his chest was sunken in the center. Harley’s chest was flat. That made him

curious. He turned from side to side wondering why he was made like this.

He went to ask Mom about it. She was making angel sugar cookies in the kitchen.

Mom knew about lots of things. Surely she would know.

“Why is my chest pushed in?” he asked. “I’m not like Harley.”

“First of all,” she said, “You aren’t supposed to be like Harley. You are Andrew.

And you were made exactly how you were meant to be.”

Then she showed him the tray of cookies. They looked perfect.

“Take a piece of candy and put one on each. Place it right over the heart.” She

said, “The candy is the most special part of the cookie.”


Andrew did. And he saw that if he removed the candy, the angel’s chest looked

exactly like his. He smiled and put the candy back on it.

“See. Right before you were born, extra goodness like happiness and hope and

talent was placed on your chest like the candy. And lots of love sits there too to hold it all

in. You just can’t see it and you can never take it off. It will always be with you.”

Andrew liked that. He knew Mom made up stories but he liked to hear them.

“Are you sure that is what happened?” Andrew asked. His eyes looked hopeful.

“Hmm,” said Mom as she gathered him in her arms. “Have I told you about the

inside-out world?”

He shook his head. He couldn’t wait.

“Well, it is said that there is a world that you can see and a world that you can’t

see. We live in the one that we can see. But the other side is the opposite of this one. In

our world, we have the sun that shines bright, but it shines cool and dark on the other.

That’s where the angels live. They don’t like it when it’s too hot.”

“I like the shade too.” Andrew said.

“When you sit in a shadow here, sometimes an angel comes to sit with you. They

are the light on the other side of that darkness. That’s why they are always around when

you are sad. They come to take it away. Then they return your light to you.”

Andrew liked that very much. His Mom touched his chest, right where it caved in.

She had something very special to tell him. “Your chest is sunk in on this side of the

world. But on the other side, it reaches out so far and wide. All your happiness spreads

across the sky for all to feel it. It melts away the sadness from others. And all their love in

return is sitting on your chest.”
“But will I have a chest that looks like everyone else’s?”

“Yes, one day your doctor may decide to make it look like everyone else’s. Dr.

Nuss says it will be very easy to do. But on the other side, it will be remembered as a part

of you that made you special.”

Mom and Andrew brought the cookies to the table so that everyone could share in

them. He liked angel cookies and he liked being just like them.

Then he went to play with Harley. It was cool to have a big brother. And he was a

lot like him too.


update: Andrew had the Nuss technique performed where a steel rod is inserted to pop the inverted sternum into place. In three years, he will have it removed.
I still remember the fear of watching how his bowl shaped(concave) chest sunk in even further when ever he took a deep breath or how he used to hide hot wheels inside it. He handled it with bravery and I am so proud to be his Mom.
  
update: Andrew's bar had been placed too low, so his chest is sinking in again, which means we have to start all over.